Before I get into the meat of this article, I want to share a link to a story that a friend sent my way: Check out Zilla's Blog Here, and then go read an article about how SEIU is taking money out of the medicaid monies that people receive if they care for their adult special needs children at home. This could be my future. I would fight this to no end.... or at least to a pay check and state pension.
Now mind you, the most a person gets for being on SSI is $674 here in Michigan. That doesn't go really far when there are medications to buy, diapers to change and wheelchairs to push. There isn't much that you can live on when you only have that much to make it through. Think rent, medicines, food, health needs, transportation... ect....
Special Manners 101: Not Rude, Just Life
Holiday get togethers, birthday parties, and field trips to crowded places are wonderful times for people to share. Well, most people anyway. Special needs people and their families love that you think enough of them to invite them. Some of those trips and settings are appropriate for them, and others are not. Please understand when we politely say "No, Thank you."
A wheel bound child might not like to go to the park that isn't set up to be inclusive for their disability. A formal sit down Thanksgiving meal may not be the greatest place for two Autistic children. A concert with limited handicap access may not be what Billy had in mind for his birthday gift.
It isn't that we don't like your home, it is that we respect the other people that will be there as well as our children enough to know that we should stay home. Everyone will have a better time if they aren't forced to deal with people who just don't understand the way their world works. My kids don't get your world and you don't get theirs. Sitting in your nice home that has never known children with tons of adults being adults would be hard for any child but even more so for one with disabilities. It isn't us being rude it is just our life.
When we plan a party for our kids it is in a time and place that we know they can deal with. It is geared to keep them safe, balanced, and content. We don't want anything less for your child so we will think of them and wish them the happiest of time but not subject each other to the chaos that could come from taking my sensory sensitive child into a crowded pizza play house. It isn't us being rude, it is just our life.
Special Manner #106: Accept that we are doing what is best for everyone. We are not thinking of just us, but you as well. It is a matter of respect, safety, ease, common sense and common courtesy. And before you think it or worse, say it... no I will not force my children to conform any more then they need to. Yes, they have to learn manners and such but they don't need to be forced into extreme, inescapable situations that we KNOW they can't handle. It isn't them being bad, spoiled, or rude, it is just their life.
If I choose to stay home because of my children, then I take responsibility for staying home. My life my choice. If you want to talk about, fine, but to give me cheap shots because you disagree with my handling of something only makes YOU look small and rude. If you truly care about me and mine than you find away to include us with out question or ridicule. Bring us a plate of left overs, save us a piece of cake, or simply accept us as we are, because we are.
Enjoy the Holiday Season. Know Love, Peace, and Hope.